Parents of a terminally ill baby who were told their son has just one year to live have been forced into a High Court battle with doctors to keep him alive.
Frank Musselwhite, 39, and Danielle Manuel, 22, were devastated when little Rimari was born with severe spinal muscular atrophy (SMA) on April 10.
The cruel condition is caused by deterioration in the nerve cells connecting the brain and spinal cord to the body’s muscles.
Rimari cannot breathe or swallow unaided, requires 24-hour care and a ventilator, and his parents say they were told he is unlikely to see his first birthday.
But an American expert has claimed UK doctors don’t understand the condition and little Rimari could in fact live well into his 20s.
The tot had to be resuscitated after a difficult birth and was put into a medically induced coma for 72 hours at Northampton General Hospital.
But Frank and Danielle were shocked when doctors applied to the High Court last Monday (13/6) to switch off Rimari’s life-support machine and withdraw care.
The couple say they were not consulted about the decision, and deny their son has no quality of life.
They claim he recognises their voices and deserves to be given care.
Frank, who is a full-time carer for his son, said: “Our solicitor said the court case may take up to 12 months and in that time it could all be too late.
“We know we might not have long with him, but now that small time will be spent battling in the courts rather than with our son.
“We don’t have much money and feel powerless to stop this.”
Frank and Danielle say they have had conflicting advice on their baby’s chances.
Frank said: “We were devastated when the doctors told us about his condition.
“They put him into a medically induced coma and put him on seven different medications.
“We were first told they could give Rimari a tracheostomy (an opening in the neck to help breathing) so that he could live until adulthood, but then they said that, after discussions, this would no longer be an option.
“They told us the social services disability continuing care team would be able to fund 24-hour care and a life-support machine at home.
“Then they changed their minds and wouldn’t let the team assess him and gave no reason why.
“Now they’ve said he will never leave hospital and he has been given between eight and ten months to live.
“We asked for a second opinion, but then we suddenly got handed court papers on Monday.
“The papers said they had applied to the High Court to have his life-support machine turned off, and for permission to withhold care while proceedings are ongoing.
“We couldn’t believe it. We hadn’t been consulted about it.”
Astonishingly, on Thursday (16/6) Frank and Danielle were told to meet with doctors where they told them the High Court would decide the next day on withdrawing care for Rimari.
Frank said: “We were called in at about 5pm, where they said a judge will decide at 10.30am whether or not to continue providing care for our son.
“We just didn’t know what to do. We couldn’t get to London in that time, or seek legal advice.
“The judge ruled in favour of the hospital, so now if he gets sick they won’t give him antibiotics, or if he needs more oxygen they won’t give it to him.”
Frank and Danielle became increasingly distraught after being contacted by Dr John Bach, an expert in SMA on Saturday (18/6).
Frank said: “He says the morphine they are giving our son is poisoning him.
“I just don’t think doctors in this country understand the disease at all and they are killing our boy.”
Speaking from New Jersey in the United States, Dr Bach said: “British and French doctors have never been interested in keeping these children alive or learning the methods I use to do so.
“There is no question about it, Rimari could live a lot longer than one year.
“I have many severe SMA1 patients who are over 20 years old. None of them want to die.
“If they used noninvasive surgery for his respiratory problems instead, but they refuse to learn.
“Four out of five patients using tracheostomy ventilation die because of the tubes, not the disease.”
Danielle, a trainee hairdresser, said she believed doctors had given up on their two-month-old son.
She said: “It’s heart-breaking.
“He is the most amazing little boy. He listens to every word I say and although he can’t make a sound he says so much just with his face.
“He is fighting for his life, so we have to fight for him.”
The couple are trying to raise £5,000 for legal fees to fight the withdrawal of care.
Danielle said: “At the moment all we care about is fighting for our son’s life. All the money will go on legal fees to try and save him.”
Northampton General Hospital admitted it was a “desperately sad and difficult situation”, adding: “The best interests of the child are at the centre of every decision we make regarding his care.
“We are continuing to support the family and, given the circumstances, feel it would not be appropriate for us to comment further at this stage.”
To donate to Frank and Danielle’s fight, visit https://www.gofundme.com/savebaby-rimari